New here. Daughter on Keto

[rackelsmom]

Here is Rachel's story, short version...Rachel had onset 3-06 with a 10 hour status. They found mass in L temporal lobe. Failed many many meds. went for surgical consult was having 30-40 tc and pc a day. It was BAD. We were using Diastat 3-5 times a week, 20mg. She was only 6 then. Regular ambu trips to Hopkins for status, about 5 a month. Had grid and 2 resections 2-22-07, 3-01-07 and 5-1-07. Sz's returned. Meds failed some more. Went for Keto. 11-07. she sz'd only when sick for first 5 months! YEAH!!!! Since March 15, 08 she has been 100% seizure free! We will go back next week to try and wean her last AED.

Was rackelsmom on epilepsyfoundation.org and actually still am, but unable to access it from work since they went to the new format. I was hoping to see some familiar faces from there...???anyone out there.

Anyway, I have loads of experience with E and would like to be of any assistance I can to anyone out there who is in those dreaded shoes I wore for so long...


Blessings,

Ann

 

[skillefer]

Hi Ann! Welcome to CWE. Look forward to hearing from you!

 

[rackelsmom]

Thank you very much! I'm looking forward to getting to know everyone here.

 

[Bernard]

Hi Ann, welcome to CWE. :hello:

There are many members here that also participate in the EFA forums.

 

[rackelsmom]

I'm so thankful to have found this site! You are doing a very good thing here Bernard. Thank you.

 

[Dutch mom]

Welcome Rackelsmom,

I have a 9 (10 in July) -year old son with the lennox Gastaut syndrome who's on the ketogenic diet for allmost 5 years now. He has hardly any seizures on the diet except when he's ill (a runny nose is enough to cause breakthrough seizures) or when his ketosis is too low. We weaned off all AEDs and clobazam in his first 1,5 year on keto. His EEG is not 'clean' but epileptic acitivity was 90-99% before and is < 30% after 6 months on keto.

More about my son and his ketogenic adventure here: http://site.matthewsfriends.org/index.php?page=joni-s-story
Do you know Matthews Friends?
They have a terrific members forum for keto parents. http://site.matthewsfriends.org/index.php?page=members-forum

 

[rackelsmom]

Hi Dutch Mom,

Thank you for the links! Your son is an inspiration! I'm so happy he is doing so well on keto. I am very blessed to live so nearby John's Hopkins, they have been such a wonderful support through all of this. They have a parent group during induction for the new parents to ask those who have been "around the block" and I've been blessed to be a part of that. Rachel will soon begin her wean from her last med and prayerfully wean the diet as well in November after only 2 years.

I haven't been on Matthewsfriends forum, I was on the PHP on EFA until they changed formats, but i like it here and can still access EFA from home.

Looking forward to getting to know everyone...

Ann

 

[RobinN]

Hi Ann - WELCOME
I am a firm believer in nutritional changes. I see it helping many with neurological issues. So many of the "diets" are similar in their basic approach. I think the reduction of simple carbs is one of the biggest reasons for improvement. Healing the gut is another.

Testing did not show my daughter's hypoglycemic reaction to foods. It took the EMT visit to clock her blood sugar at 32. That finally proved to the doctors that mom's request might not be so far fetched. So they ordered a glucose tolerance test and that is what we are treating now. My goal is to find out what is causing the blood sugar to go haywire.